Evan's Story

Evan was born in August of 1996 on my due date.  The only complication of his birth was that the cord was wrapped around his neck.  He was 7 lbs 7 oz and all boy.  He was born with dark brown hair which all fell out and was replaced with snow white curls. Evan was my third child and both of my older children were pretty easy to raise.  Evan however was born with attitude!  

Evan was a skinny baby and a skinny boy, and then one day he started to gain weight.  A LOT of weight.  And everyone kept asking me why.  I had him tested for diabetes and underactive thyroid. All of his tests came back negative, but at 9 years old he weighed almost 110 pounds. Evan always had problems breathing, but we were always told it was asthma and or bronchitis. Later, when he was overweight, we were told it was his weight.  Evan's breathing problems were not consistent with asthma, however.  He would scream "I can't breathe!" and I thought it might be anxiety related to his beghavior problems.  We have a family history of bi-polar disorder and OCD, whcih he seemed to be displaying with his anger and sadness.  By the time he was twelve, though, he was calming down, his behavior was excellent, he was getting taller, and was slimming down.  I thought the bad times were behind us.

Then, one day Evan went to school and, on a dare, he downed 32 oz of tequila straight.  He was not breathing on his own, and was rushed to the hospital where the doctor's said there was nothing they could do for him.  Evan survived, but an MRI showed that Evan had a brain tumor on his brain stem.  48 hours later the tumor was removed.  The neurosurgeon said it was a juvenile pilocytic astrocytoma, not malignant, and that Evan would never have to worry about it growing back.

The location of the tumor, however, made the surgery very difficult, and there was major bruising to his brain stem nerves during it's removal.  Evan has been in recovery since May 2009.  He has regained most of his vision and hearing, he can walk in almost a straight line, and he can vocalize just fine.  However, he can't move his tongue, he can't swallow, and when he falls asleep he forgets to breathe on his own.  So, Evan has a tracheostomy so he can be ventilated at night, and gets all his nutrition through a feeding tube. 

Evan spends his time, and uses his intelligence, working with computers.  He will be 14 years old next week, and is trying to be more independent.  We take it day by day, and try to keep him healthy and happy.